Awaiting the Meaning of Waiting Lists

They are supposed to give you solid information about program demand. Instead, they mislead the public.

This December, Arizona's child-care system hit a grim milestone: The 10,000th child was turned away from a program that provides assistance to working parents. "The children," the Arizona Republic reported, "have been placed on a waiting list."

Join the crowd. As state, county and local revenues shrink and the need for services grows, the words "waiting list" are showing up in news reports everywhere. But what do the numbers on a waiting list mean? It turns out that they can mean all kinds of different things, and the assumption that waiting lists in any two government entities are comparable is a dangerous one. In fact, the figures are often deeply flawed and could be used quite easily to mislead the public, policy makers and advocacy groups.

In an ideal world, waiting lists wouldn't be used to measure the gap between the number of people served and the number who want to be served. Instead, they'd be used simply as a kind of queue control, to keep the flow of people into a program a steady one. As Chris Brasted, a health care analyst, explains it, there could be weeks when 100 people show up for a program and others when only 30 people do so. "By monitoring demand," he says, "you can maintain the wait the way you want it to be."

But it's not an ideal world, and there are a number of ways to manipulate the lists. For example, the number of people on a list may simply depend on the extent to which a government publicizes the existence of the program. That is, a program can keep its waiting list numbers low by making sure that many people don't even know a service is available. "The waiting list," says Jay Fountain, a consultant to the Governmental Accounting Standards Board, "is just a formal manifestation of demand. It is not the true demand."

There's a "nature abhors a vacuum" phenomenon, too. People may choose not to ask for a service they know is unavailable immediately. But what happens when the waiting list is cleared? "People come out of the woodwork," says Vernon Smith, a principal with a health consulting firm. "They apply for the service they thought was unavailable." And when they do, suddenly, there's a brand-new waiting list.

As to whether waiting lists can be used as a factor to inform policy, the answer is ambiguous at best. Waiting lists tend to be made up of an aggregation of numbers and that can prevent users of the information from seeing where the challenges really are. People in urban and rural areas, for example, may be combined to create one waiting list for a particular service. But if costs are higher in the urban areas, the lists may be disproportionately longer there. Lumping the two together means program officials are less likely to see that, if they shifted resources, they could reduce the total number of people on the waiting list.

Questions about level of need are also frequently unanswered. Often, the list-makers don't know why people are on the list. A waiting list of people with developmental disabilities, for instance, could contain names of those who just need an additional $100 per month to help them get by, as well as people with more significant problems. But there may be no distinction between levels of need. "That devalues the importance and accuracy of the waiting list," says Barb Hinton, legislative auditor in Kansas.

Then, of course, there are folks who are on waiting lists who aren't really waiting. We have a relative who knew she'd eventually need a nursing home. The home she wanted had an 18-month waiting list. So she signed up and, for years, declined spaces when they were offered -- until she hurt herself in a bad fall that made nursing home care imperative. She accepted the opening the next time she was called. She had played the game well, but it meant that for many years there was someone on the nursing home's list who wasn't ready to accept the service.

Similarly, in Florida, OPPAGA, the legislature's program-evaluation office, looked at people who were offered special Medicaid services for the developmentally disabled. Those who were eligible and interested in the Medicaid-waiver program were put on a waiting list. When slots became available, 28 percent of those on the list did not enroll. According to the OPPAGA report, many of these individuals had been able to find related services through other state- or locally-funded sources. "Information on individuals on the waiting list," OPPAGA's report noted, "is often out of date and inaccurately reflects their current or potential service needs."

And here's a dark lining around that cloud: The citizens who made it into the Medicaid-waiver program had been on the waiting list the longest but were not always those who needed the service the most. "They knew very little about those people," says OPPAGA auditor Claire Mazur. "They had very little contact with them after that waiting-list placement." Since then, the state has taken measures to alleviate that problem. New legislation requires that people who are on the waiting list be divided into seven distinct categories that relate to their degree of need. Right now, the debate is over how best to divide people up into those seven groups.

Finally, of course, the actual number of people who are on a waiting list doesn't necessarily shed much light on how long it will take any one of them to actually get the service they want. There are simply too many variables. A Pennsylvania state Web site offers a "frequently asked question" about its insurance program for adults: "How long will I be on the waiting list?" The honest but not particularly helpful response: "Unfortunately, there is not a simple answer to your question."